Hi everyone, i’ve finally decided to post something here after reading through q&a’s for a while, i think im just looking for some advice from people here who’s maybe had similar experiences. Thank you in advance if you read everything and even offer some input, everything is appreciated.
A bit of a background on my dad, he is 68 years old and is a former smoker, he quit in 2014 after almost 40 years of smoking 3-4 packs a day, eventually the disease began showing its face more. He’s had this for over 20 years now as well as asthma. He was prescribed O2 for home use but would only use it as and when, then was given a Bipap to use only at night 6-8 hours. He was never compliant with the Bipap machine despite the respiratory nurses encouragement, nor did he attend pulmonary rehab.
When covid hit he never went out as the risk of him catching covid was too high, as you can imagine probably wouldve been lethal. Since around the end of 2019 he’s spent every single day at home, only went out to his yearly doctors appointment with a respiratory doctor or other appointments (we’re in the uk so he goes every year or so to get his blood oxygen checked). Every time it has been fine so far.
He would do the minimum exercise at home, sometimes getting 2k steps in but despite how much me or my mum nagged him to go out the house he would refuse.
Now the issue is within the last 6 months he’s been in and out of hospital around 4 times. Last was in Feb, all of a sudden his oxygen levels were in the 60’s and his heart rate was around 150. He got admitted to hospital, x’rays done and he was being treated for lung abscesses then had to be on the hospital NIV for most of the days to get rid of all the Co2 in his blood which was poisoning him. Since he’s been at home he’s been compliant with his bipap but has severe SOB even at rest. All the other issues coming along, he’s lost an unhealthy amount of weight, cant go to the toilet anymore and basically is bed bound. My mum cares for him.
Paliative care was suggested and they visited this week, they basically offered an anxiety medication as well as starting him on a small dose of morphine. This is all very scary to hear as the family, as i’ve only known morphine for pain relief. I do understand what theyre doing but its still heart breaking watching him suffer everyday.
Every day I try encouraging him to get up and so small things at a time and every single time he ignores me or my mum or my siblings. I cant see him getting any better if he carries on like he is which i think he’s completely given up on himself and its horrible to see. Now he’ll wear the bipap most of the day and wont even do any breathing exercises, the machine helps him breathe and I fear his lungs rely on it. He wont even try to help himself, he’s become a total couch potato.
Can anyone offer some insight on what the future holds or if you’ve had any experience? Im very scared, i know whats happening but i just wish he cared more for himself, let alone us as his family who do everything we can to help him. I feel guilty for not being able to do anything to help him and i think he still has some life in him. i’m worried about my mum who’s running around for him constantly, scared she’ll wind up sick or something.
Anyway, sorry for the long message. Thanks again if you’ve read it all and offer some advice